Rosie I need your help....

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dunny2
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Date Joined Jan 2007
Total Posts : 3200
   Posted 11/18/2008 6:18 PM (GMT -7)   
I know you don't have all the answers, but maybe you can answer me one. Why is my joint pains migrating, at
a rapid rate, from one place to another? And they're getting more and more painful. I do have fibro as well, but
this is so different...

Any ideas?????
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2008 7:35 PM (GMT -7)   
Hi Vicky,

My pain is more connective tissue than joints. It will settle in the covering of the tendons and such. Lupus causes our own immune system to attack healthy tissue. Favorite places are the covering or the lining of most anything in the body. Connective Tissue, Joints, Heart, lungs, kidneys, Brain . . . are all common spots.

I might be a bit of a misfit here (at the Lupus forum) because I've been diagnosed (SCLE - Subacute Cutaneous Lupus Erythamatosis) and then undiagnosed . . . but yet the rheumy treats it with plaquenil, pred packs, and I was on up to 10 different prescription meds at one point. I'm now only taking plaquenil and tylenol. So it really could be that I don't have lupus at all. But most recently I've been diagnosed with "most probably crohn's" by a Cleveland Clinic GI. This has been quiet all summer . . . yeah!!

I'm not positive that I'm correct . . . but I picture it like this. (Hopefully the members who understand things more technically will post and give a more accurate picture). I see the rash on my face and on the backs of my hands. My cheeks and V of neck look like bad windburn when I flare and the backs of my hands look like poison ivy. I picture the covering on my tendons, etc looking similar and the resulting inflammation makes it painful to use those limbs. My physical therapist said there was a lot of scar tissue along many of those areas and we worked hard to break up that scar tissue. It started with the upper body and forearms and the muscles that go from the neck down the side of chest and down below the arms. This caused a lot of trouble with my upper back and neck. Anyway . . . I no sooner got this under control and I started having other issues, including the bottoms of my feet (plantar fasciatis) which was extremely sever and kept me primarily off my feet for a couple of years. But I kept applying ice and standing on a tennis ball, rolling it under my weight . . . and eventually using a golf ball to keep that muscle/tendon stretched. Magically it dissapeared and I haven't had problems with it for almost two years.

Anyway . . . it attacks wherever it wants to. It can come and go from one place to another. Most lupans usually have it hit both sides of the body in the same area (like knees).

You have a triple whammy because Crohn's, fibro and Lupus can all affect the joints. One thing I've heard others talk about is that prednisone will help lupus and crohn's . . . but it can cause fibro to flare.

A lot of the members here also have RA (rheumatoid arthritis). Some have Lupus, Fibro and RA . . . so you are in great company. I always count myself very blessed that my symptoms are mild and not in any organs.

There is a member here named Ginny. She has had some huge issues with Fibro . . . I'll bet she could be a big help in helping you sort out Lupus vs. Fibro.

Sorry that was all clear as mud. But, actually, lupus hits each of us a little differently. The key word is "inflammation" . . . Whatever will calm inflammation is usually what will help the lupus symptoms. Many of us get a degree of relief when we eliminate sugar and artificial sweeteners from our diet. Both can cause inflammation.

I hope some of the others will see your post and add their comments.

What meds are you taking?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 11/18/2008 8:23 PM (GMT -7)   
Hi Vicky,
 
The fleeting joint pain is probably your fibro.  With lupus, the joint pain tends to stick to one or more places and not move around so rapidly. Sometimes it doesn't move at all and just stays put in a particular spot.
 
If you're noticing it moving around faster and more intensely, your fibro is probably flaring up. Now is the time to rest and catch it before it gets out of control! (easier said than done though, right)
 
Are you taking prednisone for your CD?  If you've so, and you've increased the dose recently, that will flare up your fibro for sure.  Prednisone and fibro don't like each other one bit! 
 
I hope this helps Vicky. I know how bad the pain can get. I can understand completely,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/18/2008 8:48 PM (GMT -7)   
Rosie & Ginny, right now I'm in tears. the pain in my left upper arm is so severe I want to cut it off. Plus I need it to help me get
up because my knees are such a mess. I can't believe things have gotten so bad so quickly...

Today my doc gave me pred (which I planned to start tomorrow) and some Tramadol. I have had 2 tramadol, and all they've done is
caused nausea. So I'll go back to Vicodin and Soma, which is not so effective, but at least my stomach tolerates it

Rosie thanks for your explanation, it was definitely clearer than mud, and I understood what you were saying. Bless you.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2008 9:01 PM (GMT -7)   
*sigh*

If the Tramadol helps more, I wonder if you've already tried it with food? With antacid? You can call the pharmacist and get some input from them most any time of day (but its likely too late for today). I see that some folks on the crohn's board do have a hard time with it.

We find that all the inflammatory pain (lupus, crohn's, ra) gets worse during our monthly cycles or just before. That is another contributor to inflammation. The only good thing about that, is that IF that time is now for you . . you might feel better in a day or two.

Also most of us can't take birth control pills. The hormones just wreak havoc with the lupus. Not sure if that is also true with crohn's . . . but there's a thought. My legs hurt so bad while I was on the pill that it scared me and the doc. It also caused really bad headaches.

I hope that pred kicks in fast for your knees and your arm. Sounds so painful.

Do you have an electric blanket? That might help get you through the night.

Keep us posted.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/19/2008 9:21 AM (GMT -7)   
Hi Vicky,
 
Rosie has some good advice on pain management.  Here is a good way to know if this is your Chrons or Fibro.  ONce you start taking the prednisone, if your joint pain gets worse, then it's your fibromyalgia that is flaring up.  If your pain gets better, then you're doing the right thing by taking the prednisone, and the pain is from your Chrons. 
 
I always do that test to figure out what is flaring.  My lupus or my Fibro?  Fibromyalgia will not get better if you're on prednisone.  Pred will only make fibro worse. It's a balancing act that isn't always easy to maintain.
 
I tried Tramadol too and it made me very nauseated. So I went to its less potent sister, Tramacet, and it was nasty too.  Pretty much every single pain medication I've tried has made me nauseated or extremely drowsy.  Can't win for losing!!
 
Deep breathing exercises helps me with the pain also.  I know this is hard.  Fibro is a beast and I wish we had more resources and action plans to battle it.  Keep in touch okay,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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